Complex ADHD Challenging Case: When Simple Becomes Complex: Managing Clinician Bias and Navigating Challenging Family Dynamics in a 6-Year-Old Girl with ADHD and Developmental Delays.

CASE: Layla is a 6.7-year-old girl diagnosed with attention-deficit/hyperactivity disorder (ADHD)-predominantly hyperactive/impulsive type-delayed adaptive skills, enuresis, unspecified malnutrition, and feeding difficulties. She presented to developmental-behavioral pediatrics (DBP) in January 2022 due to caregiver concerns for autism spectrum disorder (ASD).Layla lives in a polyamorous family with her biological mother and father, mother's partner whom Layla refers to as her uncle, and her 2 half-siblings. There is a maternal history of special education services, schizoaffective disorder, bipolar disorder, multiple sclerosis, Wolff-Parkinson-White syndrome, and ADHD. Layla's father is a veteran diagnosed with post-traumatic stress disorder. Layla's siblings, aged 5 and 9 years, have established diagnoses of ADHD, ASD, global developmental delays, behavioral concerns, and poor sleep. There is a history of adverse childhood experiences, including parental mental health, poverty, and involvement with child protective services. Acknowledgement and inclusion of all members of this diverse family structure, as well as consistent validation from the DBP and social worker, allowed a strong treatment alliance to form and the mother continued to contact the DBP clinic, even for those questions related to other specialties. A social worker received weekly calls from the mother sharing grievances related to feeling misunderstood and spoke about the assumptions she felt external providers made about her family, culture, and parenting styles. For example, she recalls the pediatrician commenting about their family structure being "confusing for the children" and describing their home as "chaotic," assumptions that may not have been made of nuclear family structures. Behavioral therapies were a repeated recommendation, but the mother verbalized not being interested in these options as she had participated in parent management training several years earlier and felt that the strategies taught were not applicable to her unique family structure, to which the clinician replied, "this is the standard recommendation for all children this age with disruptive behaviors." Although the mother was initially hesitant to trial medications, she eventually agreed that Layla's symptoms were negatively affecting her school performance, and the DBP initiated a stimulant medication.Layla's initial evaluation included a developmental history, behavioral observations, and standardized testing. The results from developmental testing demonstrated age equivalents between 4 and 6 years across gross motor, adaptive, visual motor, and speech-language domains.On observation, Layla was extremely active. During the visit, she walked over to her mother, made eye contact, and showed her the picture that she had drawn. She engaged in imaginary play, reciprocal conversation, and responded to social bids. The mother felt strongly that Layla had ASD and reported symptoms such as motor stereotypies (hand flapping), covering ears with certain noises/sounds, and rigidity when it came to things being a certain way or a certain color. These behaviors did not occur in the initial or subsequent clinic visits with DBP, her general pediatrician, or during other outside evaluations the mother pursued. The DBP felt strongly that Layla was mimicking her siblings' symptoms and provided ongoing education regarding ADHD symptomology.In terms of behavior management, the mother did not attempt to redirect Layla's behaviors during the initial clinic visit and in subsequent visits, and both adult men yelled loudly, clapped, and hit their hands on the table as a form of redirection. The mother continued to voice her diagnostic disagreement with the DBP and the pediatrician and insisted that Layla met the criteria for ASD. When the mother reviewed the report, a statement insinuating that Layla's behaviors were "understandable given parental inconsistency and complicated family structure" upset her.What factors would you consider when thinking about caregiver disagreement with the diagnosis and treatment plan? Does diagnostic overshadowing apply here?

Monitoring one heart to help two: heart rate variability and resting heart rate using wearable technology in active women across the perinatal period.

BACKGROUND: Characterizing normal heart rate variability (HRV) and resting heart rate (RHR) in healthy women over the course of a pregnancy allows for further investigation into disease states, as pregnancy is the ideal time period for these explorations due to known decreases in cardiovascular health. To our knowledge, this is the first study to continuously monitor HRV and RHR using wearable technology in healthy pregnant women. METHODS: A total of 18 healthy women participated in a prospective cohort study of HRV and RHR while wearing a WHOOP® strap prior to conception, throughout pregnancy, and into postpartum. The study lasted from March 2019 to July 2021; data were analyzed using linear mixed models with splines for non-linear trends. RESULTS: Eighteen women were followed for an average of 405.8 days (SD = 153). Minutes of logged daily activity decreased from 28 minutes pre-pregnancy to 14 minutes by third trimester. A steady decrease in daily HRV and increase in daily RHR were generally seen during pregnancy (HRV Est. = - 0.10, P < 0.0001; RHR Est. = 0.05, P < 0.0001). The effect was moderated by activity minutes for both HRV and RHR. However, at 49 days prior to birth there was a reversal of these indices with a steady increase in daily HRV (Est. = 0.38, P < 0.0001) and decrease in daily RHR (Est. = - 0.23, P < 0.0001), regardless of activity level, that continued into the postpartum period. CONCLUSIONS: In healthy women, there were significant changes to HRV and RHR throughout pregnancy, including a rapid improvement in cardiovascular health prior to birth that was not otherwise known. Physical activity minutes of any type moderated the known negative consequences of pregnancy on cardiovascular health. By establishing normal changes using daily data, future research can now evaluate disease states as well as physical activity interventions during pregnancy and their impact on cardiovascular fitness.

Society for Developmental & Behavioral Pediatrics Position Statement on Telehealth.

ABSTRACT: Telehealth has long held promise as a way to increase access to subspecialty care for children and families, including in developmental and behavioral pediatrics (DBP). The coronavirus disease 2019 (COVID-19) pandemic necessitated rapid uptake of telehealth to continue care delivery that was facilitated by "temporary" policy changes related to the pandemic. As a result, the field of DBP has recognized telehealth as a potential model of care for performing home-based diagnostic assessments, providing medication management follow-up, and delivering therapeutic interventions for children with neurodevelopmental disorders. Telehealth has been helpful in mitigating barriers families often face when attending in-person visits (lack of transportation and child care, missed work hours, etc) but has also highlighted additional determinants of health that need to be addressed to provide equitable access to care (broadband connectivity, device access, digital literacy, access to interpretation and sign language services, etc). Anticipating the lifting of pandemic-related emergency declaration and expiration of temporary policies around telehealth, the ability to continue to deliver DBP care by telehealth is uncertain. The purpose of this policy statement is to advocate for legislation and policies that support ongoing, equitable, home-based telehealth care for patients seen by DBP providers while ensuring equitable access to DBP in general. In addition, there is a need to recognize the benefits and challenges of telehealth versus in-person care and to identify clinical scenarios that favor 1 model of care versus the other.

Practical Approaches and Knowledge Gaps in the Care for Children With Leukodystrophies.

Leukodystrophies are a group of neurodegenerative genetic disorders that affect approximately 1 in 7500 individuals. Despite therapeutic progress in individual leukodystrophies, guidelines in neurologic care are sparse and consensus among physicians and caregivers remains a challenge. At patient advocacy meetings hosted by Hunter's Hope from 2016-2018, multidisciplinary experts and caregivers met to conduct a literature review, identify knowledge gaps and summarize best practices regarding neurologic care. Stages of severity in leukodystrophies guided recommendations to address different levels of need based on a newly defined system of disease severity. Four core neurologic domains prioritized by families were identified and became the focus of this guideline: sleep, pain, seizures/epilepsy, and language/cognition. Based on clinical severity, the following categories were used: presymptomatic, early symptomatic, intermediate symptomatic, and advanced symptomatic. Across the leukodystrophies, neurologic care should be tailored to stages of severity while accounting for unique aspects of every disease and multiple knowledge gaps present. Standardized tools and surveys can help guide treatment but should not overburden families.

Health Outcomes of International HIV-infected Adoptees in the US.

BACKGROUND: International adoption of HIV-infected children is becoming increasingly common. Their health has not yet been described. METHODS: HIV-infected international adoptees or refugees in foster care aged 0-20 years followed at Seattle Children's Hospital or Children's Hospital Colorado between January 1, 2004 and May 31, 2013 were included. Parameters were collected through retrospective chart review of baseline (first 6 months at study site) and annual follow-up visits. RESULTS: Africa (90%) was the primary region of origin for the 79 children who met inclusion criteria. Median follow-up was 3 years (range: 0-7). At baseline, acute malnutrition was uncommon (8%); however, stunting occurred in 32%. Most stunting resolved during the study period. The most common medical issues at baseline were dermatologic (Tinea and Molluscum contagiosum) and gastrointestinal (parasites and diarrhea). Almost half (48%) had either mental health issues or behavioral problems. Educational delays (50%) were also common. Upon adoption, only 1% was severely (CD4% < 15%) immunosuppressed. Fifty-nine (75%) were on antiretroviral therapy (ART); 45 of these (76%) had suppressed viral load (VL). Of 14 children on ART with detectable VL, 11 (79%) demonstrated non-nucleoside reverse transcriptase inhibitor resistance and 1 (7%) protease inhibitor resistance. CONCLUSIONS: In this cohort of HIV-infected international adoptees, severe immunosuppression was uncommon. Most medical issues were mild. Stunting was common at baseline but largely resolved. Mental health issues, behavioral problems, and educational delays were common. Most children were on ART at adoption and most of these showed suppressed VL. Non-nucleoside reverse transcriptase inhibitor mutations were present in most viremic children.